I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
As a mother of two young children, I have a lot of discussions about what’s fair. My son will whine about how “unfair” it is that his sister gets to watch a movie while he’s at baseball practice, and my daughter will complain about how it’s “unfair” that my son gets to spend the night at a friend’s house and she doesn’t.
My husband and I point out that they’re different people with different obligations, needs, and abilities, and they don’t exist in a vacuum. One life doesn’t get put on hold because one of them is temporarily occupied by something fun or enriching. But our responses about age, responsibility, and whatever other justifications we come up with for our decisions do little to dissuade their perspective that life just isn’t fair.
It’s a difficult concept to help young people come to terms with, especially as they get older and the injustices seem more significant. It gets even harder when the problems they face are truly unfair and can’t be explained away.
Focus on what you can control
For example, my son is on a kid pitch baseball team. A pitch-count rule is in place to protect the young boys’ developing bodies and to ensure that everyone on the team gets an opportunity to play. This policy means that each pitcher can throw only a certain number of pitches per game and then must be changed.
One recent weekend, my son was playing a team that didn’t follow the rule, and one of its players far exceeded the pitch count. When someone called out the violation, the other team simply replaced the pitcher without incurring any of the agreed-to penalties. The boys were frustrated by the unfairness, yet none of the parents or coaches had any pearls of wisdom because we were also frustrated. Instead, we set a good example by focusing on what we could control: continuing to play by the rules.
Our household has had many conversations lately that have made me think about the concept of fairness. Nothing about life with Friedreich’s ataxia (FA) is fair. The disease’s relentless erosion of my abilities is massively unfair. Because of my DNA, my inability to move unassisted, speak regularly, pop out of bed feeling rested and ready to go, do the things I want to do, or be all that I want to be is cruelly unfair.
Every moment of every day, I’m faced with a choice: I can crave justice and wallow in the unfairness of circumstances far beyond my control or I can choose to carry on.
I don’t always make the positive choice of carrying on because I can’t deny the value in recognizing and naming injustice. But I try to use that feeling as motivation to keep moving forward and to avoid the pity parties that result when I wallow in despair.
It’s hard to teach something that you struggle with personally, but maybe that’s the best way to deal with unfairness: by learning and growing together.
Fairness isn’t an issue that gets easier with age. If anything, the injustices become more complex. So it’s my responsibility as a mom to model coping strategies. Facing the unfair reality of life with FA provides me more opportunities to learn and teach from experience.
Thanks to FA, the daily process of intentionally overcoming hardship gives me an “unfair” advantage.
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